Tales from the ward: Ch..ch..ch..ch..changes,

 Chapter Sixteen: Changing Rooms.

I’ve been moved to a shared room. Maybe to keep the geriatrics entertained but it’s a tough crowd when the three ladies are either asleep or semi comatose.

Next to me is Betty, who I met at lunch. She’s unconscious, but her shirt has changed since then. Victim to the fruit crumble and custard she’d had for dessert.

Opposite me is Sheila, born in 1932, reading a magazine but keeping a close eye on the activity or lack of it on the bay.

To her right is Marjorie, who is 91, and won’t have anyone else tell her otherwise.

But she’s afraid, in fear for her life because there are men on this ward. She wants reassurance from me not that I can give it.

Nò men can come on this ward. You’re perfectly safe. Nò harm will come to you.
All I can think of was Carol’s husband and Stick Man.

I’m deaf she tells me. I can barely hear her so I shuffle closer.
I’m deaf, she repeats. Don’t worry I can’t hear.

There are some men on this ward but they’re in a separate area, I enthuse, just as a male porter comes in to change the bins.

People aren’t nice to me she continues. They say I talk in my sleep all night. But I can’t do that.
Oh yes you can , I thought. Nò more peaceful night’s sleep for me.

And there’d be no late night tv to lull me to sleep anyway. I was at the wrong end of the ward and Betty had drawn the curtains across and muted the sound.

Then Carol’s husband called out.

Chapter 17: Salt and Pepper.

Today I meet the Grandee of rehab. Marjorie who’s 99 with her hundredth coming up on Feb 6 next year.
Never met anyone twice the age of me before.

Shes got an untidy mop of white hair and felt slippers on her feet. Her beige cardigan jacket is neatly buttoned.

Marjorie’s only here because she cracked a few ribs but she still speeds her way into the dining room like a woman possessed.

I’m not sure I’d want to be a passenger in her car judging by the way she steers her walking frame.

People tell me at my age I should try to slow down but why should I? She questions.
I like to be independent.
You and me both, I think.

We’re sitting in the dining room with Sheila and Betty for lunch. There are wet wipes to clean your hands but I’ve long since given up trying to open the foil sachets they come wrapped in.

Marjorie grabs it and with one easy swipe it’s open.

She beams looking for approval. I’m seriously impressed. Her omelette and beans is the first to arrive.

While one of the nurses is squeezing open the ketchup Marjorie has grabbed the salt and pepper sachets. They too are ripped open and spread liberally over her food.

I’ve been age shamed. A woman twice my age acting like she was half mine and more.

As Betty fights with her mash Marjorie leans over to help her. It’s touching to see a woman of almost 100 mother another of 80.

How many grandchildren do you have, I ask her.

Oh, I can’t quite remember that, there are too many, but I’ve got 4 great grandchildren, a couple of great great grandchildren, and one great great great child who’s just one month old.

Five generations in less than 100 years.

I pour glasses of water and we all pretend they contain whisky or gin. Cheers , she says raising a glass in toast.

What are you doing for your 100th birthday Marjorie, I ask.

Having a party of course. Will you come?

Chapter 18: I must go down to the sea again. The lonely sea and the sky.

Two more ladies to talk to.

Emily has just had the toes of her left foot amputated after they went black. I tell her about the mother of a friend who also lost her toes but got walking again after some physio.

She wants to go home but social services need to find her carers, which they can’t right now. So she’s stuck here with me and Marjorie 99.

Opposite is Audrey who fell trying to catch a spider in the bath room that her husband’s carer was too afraid to catch.

The beast was on the ceiling and as she reached up to stick it in a pot she lost her balance and fell breaking her hip.

Her husband has dementia, so he can’t look after her. So she too is stuck here waiting for help.

Marjorie spots the dolphin pendant hanging round my neck. What’s that, she asks.
Any opportunity to talk about the sea.

Dolphins. Sharks.

Weren’t you scared? No.

I couldn’t do that.
Where have you been?

Oh the Philippines, Maldives, Tahiti. All over.
Oh, amazing.

I worked on a dive boat in Tahiti. As a guide.
Incredible.

Have you travelled a lot ? asks Emily, who’s never left the UK.
Yes.

And I want to again.

Well you must. You must get better, so when we leave we can imagine where you’ll be.
Where should I go then?

Oh anywhere. How about South America?
Better start planning

Chapter 19: Exit plans.

Today marks exactly four weeks since I’ve been in rehab and I’m starting to feel I’m making progress.
I can get out of bed so my feet are on the floor ok.

I can use the slidy board to slide over to my chair.

And I’m mastering the machine bizarrely called the Sara Steady which I just think is the silly stand because it seems so silly that it’s so bloody hard to use (And I’m pissed that Marjorie 91 uses it without issue.)

And now here’s when I get mad.

Today I’m told the rehab centre wants to get rid of me by next Thursday.

But I’m not ready I say. I need to be able to transfer safely from bed to chair and vice versa.
I need carers if you need me to leave.

But we need to give you a discharge date before we can start the search for carers. And you can only have them four times a day.
Is that it?
I’m thinking of the times I might need help. It all seems overwhelming.

I’d rather stay until I was happy.

Going home before then and risk falling at home, breaking a bone and ending back in hospital and the whole vicious cycle starting again.

As for improving after I get home? Here I’m getting physio every day and seeing small steps every day.

At home I’ll get physio ‘in the community’ once a week IF I’m lucky.
So that will be 2x a week IF I rehire the private physio I had been using before this.

I can only hope that I’ll retain whatever fitness and strength I have when I do eventually leave.
And the government wants to get disabled people back in the overall community and stop being so reliant on social services?

We can’t if the system is so crippled itself the patients it discharges are unfit for purpose.

Chapter Twenty. Death becomes us.

Marjorie 99 left us yesterday.

She slipped away while I was meeting the social worker.

Never even had the chance to say goodbye.

Her departure kept me awake last night.

Born right before the end of WW1, a munitions worker in London in WW2.

Different times.

I woke today at about four as usual, just as the light started to filter through the skylight above me.

It was hard to see what kind of day it might be without direct reference to a window.

Betty, next to me, had been coughing like she’d smoked 100 a day her entire life and was dying from emphysema.

You could hear her struggling to cough up whatever phlegm it was stuck in her throat and wonder if she was choking.

Sheila and I would check.

She’d so far responded that she wasn’t. One day of course she would be or it would be too late to help.
I glanced across to Marjorie 91.

She lay stock-still on her back. Her mouth wide open with lips drawn back, almost as if she was in rigor.

No sign of any dentures. No sign of any breathing either. Was death was amongst us?
Silence.

I waited.

She’d not been well the last few days.

Often, I’d catch her staring vacantly into space. Hearing too bad to listen to music. Eye sight too poor to read or watch tv.

Is this what death was like? The closing down of each sense one at a time until there’s nothing left? Brain might be there. Body is not.

Suddenly she flinched.

I breathed in relief. Not dead after all.

I determined to find out Marjorie 99’s details so I could make her 100th party.

 

Germs, bugs and getting older

More Tales from the ward

Chapter Thirteen: Outbreak.

How often have you taken a long-haul flight feeling perfectly healthy when you got on the plane but by the time you got off 12 or 13 hours later have a streaming nose and blocked sinuses?

Your cold caught from the virus circulating at 38,000 feet along with the air inside your A380 or B747.

It’s impossible to keep an aircraft sterile and germ free with the movement of so many people.

But hospitals, which by their very nature are full of sick people, constantly strive to avoid such situations.
 Obviously the majority of patients are not in hospital with infectious diseases but many do have life threatening illnesses or open wounds.

Think back to the Ebola outbreak in West Africa if you want an idea of how devastating and how fast a lethal virus can spread.

So, with the rise of drug resistant bacteria and the increasing redundancy of so many first line treatments it is more important than ever to keep the wards germ free.

Every hospital visit I’ve made in the past year (including the 10 hours in St Thomas’ 😑) began with a swab of my wet orifices.

That’s my mouth nostrils and butt hole if you’re not clear.
 The nurses were testing for the presence of MRSA – methicillin resistant staphylococcus aureus to give this bacteria its full name.

It is, as its name suggests, resistant to many drugs and can be fatal.
 Nurses must wear surgical gloves every time they come into contact with one of their patients.

It’s rather impersonal but avoids potentially infecting others with any bacteria or viruses they may be carrying. 
So I had to smile when I got to the physio gym yesterday.

The bed I was about to lie on was certified clean with a Declaration of decontamination status.

Glad to know how we mere patients are considered

Chapter 14: Pooh stories.

Oh what a wonderful morning. Oh, what a wonderful day. I’ve got a wonderful feeling I’ll hit the bedpan ok.

Ever had that horrendous Oh shit moment, both literally and metaphorically, that you need the loo urgently to avoid the obvious.

That was exactly how I felt at 4.45am this morning when my eyes flew open.

Now while you can jump out of bed in a moment I need the use of my now favourite instrument of benevolent torture the Stand Aid.

This machine involves being first strapped in at the waist so tight around your middle you can barely breathe, then being roped and tied in close before being hauled into a standing position and transferred to a commode.

Again whilst this might take you seconds to stand up it takes me approximately 4 to 5 minutes.

And I’m doing this with my butt cheeks tightly clenched to avoid a monumental… well you get the idea.

So it continues up down up down repeated times and it is now only some 9 hours later that am I starting to feel normal.

I’m tired dehydrated any in pain and you can see how easy it is in the developing world to die from diarrhoea.

After my last use of the commode I saw the nurse writing something down.

What’s that you’re doing I asked. Noting down what you’ve pooped and its consistency.

She showed me the chart with pictures.

One being constipated (hard lumps, like nuts) to seven (watery, no solids)

Turns out there’s an online Chocolate stool chart too. One  being (Maltesers) Seven (Melted chocolate)

And a festive one too. One (Roasted chestnuts) Seven (trifle overly indulgent)

I have just two words.

Who knew.

Chapter 15: The generation game.

Today I’m lunching with the others here.

All 17 of them are easily 30 years my senior.

I may be in a rehab centre but I am definitively in an OAP home. They just about as interested in me as I am with them.

We’re fed strictly on an OAP schedule.

Tea in bed early, about 6.30am.

Lunch is late if the clock is past 12.30.

Followed by tea or coffee.

Then once the wrinklies are wheeled, pushed, or trollied back to their respective rooms there’s more hot drinks offered with cake or biscuits, before dinner served promptly at 5.30pm.

I can barely digest a meal before another is shoved in front of me.

And while I may have been enthusiastic about the menu when I came in two weeks ago, I am now seriously over the constant bland nature of what’s on offer.

A chicken biryani rarely gets any interest, I’m told. The name perhaps putting off the less adventurous diners. And having tried it I can see why.

Maybe they should have billed it on the menu as Bland Tasteless Chicken with bland unseasoned rice (better not say Basmati, for alienating the potential diners)

Sweet chilli sauce is my new BFF

The idea is to let the residents socialise but there’s no real conversation going on, more snippets of comments along the lines of: I can’t remember what I wanted for pudding, or can I have that?

And interactions are generally on the prompting of staff rather than from another resident.

What conversation did take place related to somewhere nearby. These folk had likely never had a passport nor even got to London.

How wild eyed might they be if they knew the places I’d been or things I’ve seen. Now they’ve been fed the group comes alive.

The talk of when they can get out and if they need a carer.

One lady got up and left shuffling with her walking frame.

You need someone with you said another, her voice tailing off as the woman disappeared.

A man said here was a better place than the hospital he’d been at before.

There was a man in the bay next to me threatening to blow up the hospital and kill as many as he could, the man said.

No talk of terrorism. Just another OAP.

Bed, bath & stars. More from the ward

Chapter Ten: Then they came for me.

Sara was our latest departure.

The doctors deemed her fit enough to go home, though they warned she may never recover her lost three days.

Her mother and father had gone too from her memory of who had picked her up from the roadside.

It was a man. He helped me take off my jacket, she said.

We exchanged numbers and Facebook profiles.

In her place came Joyce.

I was here two weeks ago in Christine’s bed, she said. I have bleeding in my brain from a fall and some seizures.

She was in the 2-day-stay bed  (Sara, preceded by Lily, who I’ve not mentioned before, and Hashimoto, and Pam with pins and needles) but I got the feeling she might be there a bit longer.

Night stalker, who was really called Tracey but would only answer to Jane, also had plans to leave – waking up in the night to pack her plastic bags of possessions and move them into the day room.

The nurses moved them all back this morning.

When they told me I was finally going to rehab I burst into tears.

I wasn’t ready to say goodbye to my dysfunctional ward family.

It’s amazing how quickly we become institutionalised getting used to the routine of eating washing physio resting.

Lights out about 10 listening to nightly chaos.

The madness of ward 11 in 13 days. I’d had only one night of full sleep since I’d been here.

Vertigo was still dizzy in the head to my right.
Christine was still very dizzy in the head to my left. Calling out for husband John children Sarah and George, grandchildren Sophie and Julia in the night.

Still insisting she did not have dementia, despite agreeing with me she did get confused.

This morning believing she had a lunch appointment in the Isle of Wight and she needed a car to get there.

And despite being on bed rest deciding to get up change out of her hospital gown into her clothes and make for the exit.

How would quadriplegia fare?

A family full of drama and friends who seemed not to understand that sometimes the best help they could offer was to stand back and let her decide for herself what was best for her not them.

I hate goodbyes.

The ambulance was coming at two.

Tales from the ward Chapter Eleven: The bed bath.

Keeping clean is one of the animal world’s essential needs.

Just this morning I watched a blackbird perform his own daily ablutions in the stone birdbath through the window of my new hospital room.

First he would lower his chest onto the water then dunk his tail into the liquid and with his wings artfully fling it over his back. It didn’t look particularly effective at first but a few splashes later he was wet all over.

Obviously, he did not have the benefit of a weather forecast, as it is now bucketing down.

But how about when you are stuck in bed and unable to get to the bathroom yourself?

Let me introduce the ‘bed bath’ performed by nurses in every hospital everywhere.

This is no time for prudishness. You are going to get naked in front of strangers and they will be prodding poking and rubbing parts of you that you might prefer they didn’t.

But what choice do you have?

Scuba diving to cleaner stations has allowed me to witness close up manta rays, thresher sharks and even my own fingernails being manicured as cleaner fish and shrimp nibble parasites and dead skin from their far larger counterparts.

So the human version: face arms and torso first.

Would you like soap on your face, you are always asked. Then it’s your pits and under your boobs.

Next your legs the delicate parts followed by a roll to your side for your back and bum. A good wash and dry between the legs and you’re done. No more than five minutes to complete.

A roll of deodorant, a slather of moisturiser and body lotion finishes your look. A hair wash can wait until tomorrow.

Tales from the ward Chapter Twelve: Twinkle twinkle little star.

Maybe I am going mad, but I woke at 4am this morning asking Christine where she was going and then turning over to ask quadriplegia how many times Christine had tried to get up in the night.

Dawn had broken and it was already light outside.

I realised in another second where I was but the act of rolling had induced my need to pee.

And here is one of the more difficult issues facing the bed and wheelchair bound – what to do when you need to relieve yourself.

You can’t simply get up and go to the loo and the length of time it would take to get you onto a commode would also likely mean just peeing on the floor.

So what do you do?

Quadriplegia preferred a bedpan but I can’t pee horizontally and I generally end up peeing down my legs. Yeuch.

She’d also used a catheter until it gave her a UTI.

A doctor had previously tried one on me but it felt like being raped and we’d had to abandon the idea before I’d even used it.

So I pee-ed in my pad like most women. These are like an industrial sized sanitary towel with an amazing ability to capture liquid. Humiliating? Yes. But also a necessity.

In the boredom of ward life quadriplegia then coined a code word for peeing behind the curtain. Twinkle meant success.

We began comparing the amount of each pee.

Epic was for obvious reasons just epic.

We kept a tally of who was winning our pissing match.

I think I won on a technicality only because Danielle our nursing assistant would teasingly count the number of pads I’d used during her shift threatening to limit me to three.

Our crap shoot was a different matter altogether.

Lying bed bound means getting peristalsis going is difficult if not impossible.

Often days went by without a poop. Feeling bloated was a constant.

A daily dose of laxatives was required. For quadriplegia, multiple doses. Her paralysis affecting the movement perhaps more than me.

I needed the benefit of altitude to get me going, using a hoist to get me vertically off the bed. A contraption that can only be described as an instrument of benevolent torture. My opponent still preferred the pan.

I don’t know how she did it.

There were a few epics, sometimes smelly, but finally success when the unicorn had landed.

 

Security, stalkers, strangers in the night

More from the ward….

Chapter seven: Hospital security.

What is it about the night?

If I thought my ward’s regular evening hostilities were extraordinary, they utterly paled to insignificance last night.

Early evening we’d spotted the Ward Stalker. A confused looking man who liked to roam the corridors with his walker.

He’d waddle past our bay and peer in.

You could see his face creasing as he either tried to work out we were women or work out this was not his part of the ward.

He seemed harmless enough.

As the light dimmed Carol’s husband was back still looking for her.
He was out walking too.
Noisy but safe.

Man with walking stick and menacing stare completed the trio.
His face was covered either in bruises or port wine stain birth marks, I couldn’t tell.

He walked into our ward demanding to speak to the nurse. His refusal to withdraw from the lady’s area should have been a teaser of what was to come.

Night fell.

I was awake again thanks to another late coffee.

Christine was settling down for the night. Even she had calmed down over the past few days.
I’m so tired, she said.

So am I, I thought.

Night Stalker was quietly chatting with a new arrival. Then peace.
Shattered

Screaming from the men’s room next door. Christine’s bed guard looked alarmed.

Stick man was armed and dangerous.

Help, help, help, came the screams.

Security was summoned. I could hear Carol’s husband egging him on.

Then Stick man thrashing around making contact with security.

More screaming.

They’re trying to sedate him, one of the nurses said.

I dozed.

More screams and more security running down the hall.

Any chance someone could roll me? I asked a nurse, my hip throbbing.

No, everyone’s tied up next door. I’ve got 6 people trying to get out of bed. Six security, the director of psychiatry and nursing there.

Next morning my new bed neighbour, in six, admitted with severe vertigo, remarked: I used to work in a prison. That was nothing.

Tales from the ward Chapter Eight:

The weirdness continues.

Hashimoto had gone and there was another new member for the Weird Diseases Ward.

Sara had come in having apparently fallen from her motorbike at a junction.

She may have been test riding it but she couldn’t remember.

She may have been test riding it but she couldn’t remember.

It might have been a Yamaha but she couldn’t understand that either because she doesn’t like Yamahas.

Her parents also helped her call her partner but they died a few years ago. We told her she was imagining them, but they were there, she insisted.

It’s funny and tragic. Amnesia.

She asked again. Did I fall off my bike?

Was I on a test ride?

Have I asked you this?

Is it Saturday?

June 3?

2017?

And so on and on and on.

Night Stalker was back in business, opening and consuming Sara’s cheese and onion crisps.

If she wasn’t freaked out enough already that did it for her.

Was someone standing at the end of my bed?

Did someone eat my crisps?

Did I fall off my bike?

Was I test riding it?

Am I going mad?

No but we might.

Tales from the ward Chapter Nine:

The Ward Stalkers.

I finally got eyes on Carol’s husband.

His booming baritone did not match the diminished body I saw shuffling down the corridor.

He paused at our doorway peering in perhaps to see if Carol was there.

It was only later that he tried to enter.

His name was Marcel and he wore a greying moustache reminiscent of tv’s Hercule Poirot.

His was not quite the finely coiffed and waxed version I’d seen countless times on tv, however.

More a salt and pepper gorse hedge shoved untidily under his nose.

No three-piece suit either, but a long black dressing gown over his hospital pyjamas completing the look.

His overall demeanour said Elderly stereotypical Frenchman lost in hospital drama.
The only case he needed to solve: where his wife was and why he was there.

Marcel was accompanied by a chaperone.

It was the hospital’s attempt to keep wayward members of the male bay next door under control.

Stickman aka Steve was also on the loose.
Also with chaperone. His face not covered by birthmarks, but bruises from some monumental face plant.

His nose didn’t look broken but it was hard to see how it could not have been.

We could tell he was approaching by the sound of his stick striking the floor.

As the noise grew louder an apprehensive silence descended. All of us on alert in case he made it past the barricades we’d roughly assembled in our doorway.

Last of the walkers was Gloria.

Resplendent in her pink fluffy dressing gown.

There was no stopping her.

Sweeping in to stand and survey all those who lay down before her.

It’s getting late Gloria, I said. We’re trying to go to sleep. Maybe It’s time to go back to your ward.

Gloria turned to look at me directly.

Why should I?

 

More Tales from the Ward.

Chapter Four: The morning drug run

Pablo Escobar would have more luck shifting this load of narcotics than the nurses today.

Six patients and 90 minutes later and the nurses are still trying to rouse half the patients here.

Christine’s insisting she doesn’t need the mega-dose of antibiotics for her infection because she’s a nurse and she knows it doesn’t work for her.

In the next moment she’s asking to have her appointment at the New Zealand cardiac centre changed, and can she call to change it.

Meanwhile Two-Tone cannot be woken in any way. Her silence the only indicator of her state of consciousness.

Overnight there’s been a huge thunderstorm. The man down the hall has been calling for his wife Carol, roaming the corridors with some determination to find her.

Night Stalker is also comatose having spent the night hovering over the sleepers.
No amount of prodding results in even a flicker of movement.

Christine wants to get out of bed again. A nurse maintains station at the bottom to prevent her. The nurses have swapped her bed with Two-tone so that they’re closer to the action.

Finally, the drug nurse arrives before me and starts to examine my stash bag of medication I’ve been faithfully taking twice a day.

I can identify what I need to take just by looking at the foil strip, but the nurse insists on removing each pill and the replacing the packet into the bag.

I call out the meds by their brand name but that’s no good here. I need to take a course in pharmacology.

Eventually I’m presented with a small paper cup of anonymous white pills of similar sizes. My bi-coloured MS capsule I know. That’s easy. But the others?

If I could out of the hospital onto the mean streets I could get something going here.

 

Chapter Five: Late night tales.

The fading light always seems to herald a change in character of my ward mates.

Two-tone had a new tune. The notes higher and longer. I couldn’t tell if she was more at peace but it was less annoying to my ear. No-one could wake her from her torpor during daylight. Night time really did bring her alive.

The doctors had prescribed Night Stalker a sleeping pill. She’d been unconscious most of the day.

“We need to get you resting at night,” they said. Between the lines: so we can too.

But the drugs hadn’t taken effect yet because I watched as she counted OCD-like the pleats in the curtain surrounding her cubicle.

Once she’d entered she counted them on the inside. Then she’d re-emerge to collect another coffee.

No wonder she wasn’t sleeping. Even the hot brown hot liquid masquerading as coffee must contain some caffeine.

To my left, Christine was beginning to kick off. I’d heard her earlier telling the nurses that doctors thought she had dementia but she couldn’t believe that was correct.
Then she asked when her husband John was coming to drive her home.

Later after fighting off the nurses trying to prevent her getting out of bed calling for John to wake up.

As I tried to sleep, screaming: ‘HELP POLICE.’

Carol’s husband had clearly found her because he was quiet tonight, although I could just hear the sound of a wounded animal whimpering down the corridor.

As Christine kept the nurses engaged Hashimoto decided to make the night even more lively.

Her attempt to get up to shuffle to the loo ending with high speed onto the floor.

Lights on. Everyone awake. No point trying to shut my eyes really.

Later she told me of the loss of her daughter at eight weeks old.

My marriage didn’t survive, she said.

Chapter Six: The NHS diet.

You’d think that for all the lecturing Britons are given as a nation to eat our ‘Five a day’ hospitals at the very least would make a better effort to practice what they preach.

But judging by the vast array of mush on offer on the daily menus it is a physical impossibility to even come close to that number.

The day begins early with an offer of tea, brown liquid masquerading as coffee or hot chocolate which is really just cocoa flavoured sugar.

That’s pretty good, but as it’s sugar it should probably be banned.

Lunch: soup from a tin (high salt content), a salad with plastic cheese (plastic), slices of ham (isn’t that red/processed meat banned too?)

Moving vaguely to the veggie section: jacket potato. But that’s not really veggie because it’s starch.

Accompanied by beans, which should be banned for the methane content, tuna, ditto for the mercury level, or cheese, which should be banned for the cholesterol.

Onto the hot mains of slush: cottage pie, hot pot or macaroni cheese. A possible item with texture roast chicken breast, with the skin off, of course: high fat content.

More potatoes creamed or roast.

But, oh, a possible bit of green: vegetables of the day, straight out the tin.

Dessert more stodge: jam sponge, apple pie, rice pudding, jelly and ice cream.

So, not only do I feel like I’m on a mental ward I may be on a children’s one too

If it wasn’t for the FRESH fruit lady I can’t see how anyone could get a balanced diet.

Which makes it all the more laughable that I had a row with the nurse dispensing meds this morning over a vitamin D pill I keep in my drug bag for simplicity.

We have to prescribe it, she said, and have it in our system.

Why, I asked, I can hardly overdose on a vitamin pill I take because I can’t get outside and get naturally by sitting in the sun.

Later the food lady came round to take my order.

I joked about the appalling coffee.

I can get you some Nescafé sachets if you want. You just have to ask.

Disabled in the NHS…

No ranting about funding shortfalls just yet…

I’m back,

Apologies for not updating my blog for a while but six, almost seven weeks of hospital life in the UK, and not a lot of internet connection will do that for you.

One MS attack affecting my left hand and arm, with weakness in my legs has stopped me from doing much other than let my imagination run riot. So, while I’ve not been able to travel I’ve been writing short pieces about life as I see it from my hospital bed.

I’ll release a few pieces over the coming days starting here with Chapters One to Three – introducing Tales from the Ward.

Chapter One: The Ward.

I’m the new arrival in a side bay of an acute and chronic neurological ward at a big teaching hospital. There are six of us, three each side of the bay, facing each other. Even lying prone I have a bird’s eye view of my surroundings from my centre bed.

Opposite me are beds one to three. Bed one is closest to the nursing station. There are doors to the bay, which can be closed but they remain open all the time. At the other end – the windows. And even though these barely open, they are our only access to fresh air.

Each bed could be veiled by a polyester-cotton sweep round curtain with a bamboo-leaf style print on it. I could never decide its exact colour – it depended on the daylight and time of day. But puce green – the kind of colour you feel when you’re about to vomit – was the only fix I could get, despite hours of staring.

The first few days I just watched, not really sure of who was who, or what was going on. And then it blew up quite literally in front of me. This is an episode of scatological proportions.

It began quietly, virtually unnoticed in Bed Three, opposite to my right.

A quadriplegic patient was trying to have a crap. (Aren’t there a lot of euphemisms for the same thing in English? Poop, crap, shit, Number 2, pooh. We’ll settle on crap, for now)

She’d been trying for ages.

It wasn’t her fault she couldn’t move. But everything below her neck was without movement or sensation. Her innards as powerless as the rest of her body.

But there she was lying on her back trying to force out waste that she could not feel and had no ultimate control of. Multiple doses of laxatives had had little, or no effect. Whatever was going on, it didn’t sound pleasant.

Next door in Bed two, facing me, there was an explosive incident, resulting in the forced intervention of two nurses. Uncontrolled urination sounded like the problem here. I couldn’t see. All veiled behind the bamboo curtain.

Not that I would probably want to be a witness to the nurses’ mopping up operations.

But like the child hiding behind the sofa facing the tv with fingers over their face hoping the Daleks didn’t invade, they can’t help but look.

And I wanted an eye on the world inside my new home.

It was getting late.

And the nurses hadn’t turned out the lights until gone 11. They normally wanted us to settle down after dishing out the last round of medications.

I was trying to sleep, but the noise and low lights were making it impossible.

Inexplicably the woman I had figured to be a manic depressive in cubicle one suddenly exploded in a torrent of abuse.

How can I sleep with people pissing and shitting everywhere? This is fucking ridiculous.

How can we? I thought, with your racket.

Where is my privacy?

Impossible in a curtained side bay of six beds.

The dementia ridden stroke patient in bed four to my left  – who I later learned was named Linda – had stopped her nightly monologue of nonsense about the location of her shoes and to ‘look behind the washing machine’ to complain about the cold.

It was 20 degrees and I would have been sweating if I could.

At least the windows were open until Manic decided otherwise and promptly got up to close them, knocking a jug of water over and blasting the nurses for storing pee in a pot.

The histrionics continued till gone one, until the offer of tea and cake placated her outside our six- bed bay.

All went quiet for about 20 minutes when the form of the Norwich One appeared. A ranting geriatric loudly complaining about her being moved to the ward from another room. And late at night.

(She had a point about that -The details are too boring to relate here but in her own words they were going in circles.)

Finally, she moved to the nurses’ station outside where she continued. She respected their position but she reserved the right to contradict theirs.

Even the stroke patient had finally tailed off about finding her shoes and wheelchair. It was gone four and the sun was coming up.

At five am, after just one hour of blissful sleep I was woken to change my position to prevent bedsores.

Norwich One was still talking. I’m getting tired now, she said.
Only two hours to breakfast.

Tales from the ward Chapter Two:

The curious incident of the banana in the night time.

I woke early this morning after a peaceful night at last.
It was about five and the sunshine was only just piercing the thin cotton curtains that covered the windows.

As my eyes adjusted to the light I caught sight of the banana I’d left on the table overnight to munch on for breakfast.
That’s weird. Never seen banana skin split like that before, I thought.

As I looked closer I’d could see the fruit inside half eaten and then the fruit delicately placed back in position on the table.

Oh, that’ll be our night stalker, one of the nurses said. She meant Manic, but Night Stalker sounded so much better.

Not exactly comforting to think that someone had stood over me unwrapping that fruit while I slept, carefully consuming half of it and returning it to its place.

I’d been warned about keeping my phone locked up, so my wash bag was the nearest I could hide anything.

The other patients spoke of waking to see the stalker standing over them. Watching.
It’s all fun here.

Changes overnight: Linda to another room, apparently with an infection.

But it meant quiet had returned.

Tales from the ward Chapter Three: Think of the white bear.

It’s amazing I get the opportunity to sleep here. The lights go down the madness comes out.

Yesterday had started out so well.

We’d chopped the legs off the standard hospital issue pyjamas to make some shorts. Everyone had had hair washed. By 11am things almost seemed normal.

After Linda, we said goodbye to Pam from Bed two, who came in with pins and needles and left with cancer.

To my left now, in Bed four, was Two-tone, so called because when conscious she emitted a non-stop two tone beep like an alarm clock stuck in wake up mode. Nobody minded during the day when the general bustle of the day hid her noises.

It would take on a whole new meaning later.

I gave Norwich One a name. Christine from Down under. She’d had a fall, banged her head, but kept wanting to get up to use the bathroom.

I shared her desire to escape but was not in a position to do anything about it.

Bed three – Quadriplegia – was suffering from something straight off the home page of weird diseases dot com (There is such a site, but there’s nothing actually on it and it’s up for sale. Too weird I guess…)

She had Functional neurological disorder, where the brain seems to have short circuited and forgot what it’s meant to do – like send nerve messages to bits of the body so they can do what they’re supposed to.

Net result here: quadriplegia.

Sharon was another new face in two, facing me.

Welcome to the weird diseases ward, I said. What have you got?

Hashimoto disease.

Night fell. Characters changed.

Down Under Christine became belligerent. Suddenly she was at the bottom of my bed. I must get to the loo.

She fell. Put back to bed. She tried again and again and again.

Bed One Night Stalker was keen to intervene. The only patient able to walk was just in the way.

The staff were herding cats.

Down the hall, a man was demanding: feed me.

Two-tone’s chanting volume had reached multi decibel levels.

Hashimoto is desperate for her to stop.

A nursing assistant tells me: think of the white bear

 

 

 

 

Disabled in the menopause…

icecream

Why a hot flush means more when you have MS:  😓

Menopause has always been one of those ‘women’s things’, certainly in British culture. A last taboo, something that is whispered about behind outstretched hands…’don’t mind her, she’s going through the ‘change’ ‘. What an archaic euphemism. All eloquently explored by the BBC’s Kirsty Wark recently, talking about her own experience.

But the symptoms of night sweats and hot flushes take on a whole new level of unpleasantness when – like me – you can’t control your body temperature.

I first became aware I’d lost the ability to sweat about 18 months ago when I almost passed out watching flamingos in Kenya.

Remember this shot?

OLYMPUS DIGITAL CAMERA

Lake Bogoria, Kenya

What you didn’t see was the litres of cold water being poured over my feet a few minutes after this shot was taken in a desperate attempt to stop me fainting, much to the horror of local villagers. What a waste of good drinking water.

I already knew that when core body temperatures rise in people with MS they can suffer a loss of strength, mobility and co-ordination.

But when the body has lost its primary ability to lose heat – sweat – what can MS-ers do?

Living in a tropical climate overheating is an on-going concern, but in Britain? (Mean annual temperature 11c, hottest monthly average 19c) Didn’t think I’d even have to worry about it.

But then came the menopause. Regular, unwanted, super-hot moments. Oh yeah. The curse of the hot flush. And I’m not talking about a pirate-themed movie starring Johnny Depp.

It’s the body’s way of saying as you can’t have kids anymore, I’ll just give you one long-lasting punch for maybe a year or so to remind you you no longer serve any evolutionary purpose. Bye-bye. Syonara. Get lost.

The menopause was first described by doctors back in the 1800s, although references to it go back as far as the ancient Greeks.

I used to look forward to arriving at this point in my life. No more PMS. No more bloating. No more feeling crap half the time. Oh no more.

Hours spent every night now with my scarlet-looking feet stuck out from the bed covers trying to shiver and hovering by the open fridge door waiting for the veins popping out the backs of my hands to shrink and flatten.

Back in Malaysia I could keep my cool with air-conditioning. But not so Britain with its hyper-insulated, over-heated homes.

What happened to the drafty Victorian terrace I used to live in?

Sitting in front of a window left ajar with a strong wind blowing doesn’t really help because while my extremities turn blue and feel at risk of frost nip, my core temperature still can’t cool down fast enough for me to be able to function normally.

It’s a problem I hope scientist Davide Filingeri at Loughborough University can help me find an answer too.

I met him online last week during MSAwarenessweek and he’s doing research into how and why people with MS suffer such loss of function when they get hot (even if the rise in temperature is less than thought to raise your core temperature).

His uncle and a family friend both have MS and suffer similar symptoms to me when regulating their body temperature.

The idea is to find better ways for MS-ers to cope with temperature extremes. Can’t come quick enough.

I’m going to offer myself as a lab rat to help his research.

Meanwhile, my latest purchase:

fan

A tower fan

😂